Background and Methods: We report historical information from longitudinal data held in the British Isles Rett Syndrome Survey (BIRSS) concerning women of at least 40 years. This information, including comments on the quality of care, has been provided by families, carers, and clinicians. Results: Information was available on 30 women with a…

Background: Prader-Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS. Methods: Parents completed three validated assessments, the Glasgow Depression Scale-Carer Supplement (GDS-CS),…

Background: Negative mental health implications of menopause found in the general population, combined with high rates of mental health conditions found in women with intellectual disabilities, provide rationale to examine the existing literature to determine the impact of menopause on women with intellectual disabilities. Methods: The review was…

Background: Since the introduction of austerity measures in 2008, funding for care, welfare, services and support systems in the United Kingdom has been reduced. There is little research that explores the experiences of parents of adults with intellectual disabilities and service providers regarding care, relationships and social networks in times…

Background: Families with a child with profound intellectual and multiple disabilities have to manage the pervasive support needs of their child, which is a complex task. By properly supporting them, we can ensure these families live a positive and meaningful life. Method: A product to support these families was developed using the method of…

Background: Individuals with intellectual disabilities are as vulnerable to depression as their typically developing peers. This study aimed to verify the reliability and validity of the Center for Epidemiologic Studies Depression Scale (CES-D) in individuals with intellectual disabilities and determine whether the scale is appropriate for…

Background: Staff supporting people with intellectual disabilities may experience work-related stress that adversely impacts their wellbeing and capacity to provide support. Acceptance and Commitment Training interventions like Promotion of Acceptance in Carers and Teachers (PACT) have been shown to be effective for reducing stress and promoting…

Background: There is a lack of evidence to inform the provision of safe hospital care and treatment to children with intellectual disabilities. Methods: Interviews were conducted with 52 parents/carers of 42 children with intellectual disabilities and 98 hospital staff about the care of children with intellectual disabilities during in-patient…

Background and Aims: Siblings play a crucial role in shaping and guiding the experiences of their brother or sister with a disability across the lifespan. However, little is known about the positive outcomes of their roles and experiences as siblings. Understanding the positive outcomes challenges stereotypes and the stigma associated with…